Why we’re helping people with albinism to stand strong


A guest post from Roselle Potts, Chair of the Albinism Fellowship on International Albinism Awareness Day 2019. ‘The prejudice and struggles facing people with albinism are sadly as present as ever in 2019… ‘International Albinism Awareness Day is with us again on 13 June and it’s a chance to reflect on the progress that has … Continue reading Why we’re helping people with albinism to stand strong

How amazing is Ursula?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Today Ursula shares her own amazing story. Hi guys! I just wanted to share my story with you as this may give other people with nystagmus, or parents that have children … Continue reading How amazing is Ursula?

“I’m struggling to see at work”


A guest post from our Open Day 2019 keynote speaker, Daniel Williams, founder of Visualise Training and Consultancy: Losing eyesight is both challenging and difficult, scary and disconcerting. Having to change the way you do things, adapting to new challenges and learn new skills can be exhausting. Perhaps one of the most difficult aspects of … Continue reading “I’m struggling to see at work”

ANUK conference 2019


Conference 2019 Learn about aniridia and related conditions from each other, and professionals in medical and related fields. Find out how those affected by aniridia deal with it every day. Contribute your experiences, ideas or skills to help others. Expert presentations Dr Simon Hayhoe from Bath University Inclusive Technologies for VI people Dr Ngozi Oluonye from Great … Continue reading ANUK conference 2019

Guest post: Audio described tours at Tate


Dear Friends, This is a message from Marcus at Tate in which I would like to wish you a very happy new year, and to tell you about Tate’s Audio Description tours for Blind and Partially Sighted visitors in January and February. Our first tour of the year is at Tate Modern, and takes place … Continue reading Guest post: Audio described tours at Tate

Guest post: Mélissa’s story of acquired nystagmus


Mélissa was a healthy young woman, living and working in Canada until suddenly she acquired nystagmus and everything changed. Melissa is now adjusting to her new life with nystagmus and wanted to share her story of hope for the future … My beautiful, wobbly world My name is Mélissa Khalifé, I’m 30 years old and … Continue reading Guest post: Mélissa’s story of acquired nystagmus

Guest post: Harry’s back at school!


Over the summer holidays we followed Harry’s progress as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his nullpoint. Today we hear from Harry’s Dad, Ian, how Harry is getting on, 4 weeks after his operation. Ian writes: “Harry’s eyes are now nothing but a slight irritation and, apart from … Continue reading Guest post: Harry’s back at school!

Guest post – Harry’s recovery from surgery continues


Harry and his family continue their post surgery journey. Ian writes: On day 7 after the op Harry is able to open his eyes for longer periods, the blurry vision is settling down and he is able to see much better. He is still having to have eye drops 4 times a day for the … Continue reading Guest post – Harry’s recovery from surgery continues

Guest post – one week after Harry’s null point surgery


Harry has undergone the Anderson Kestenbaum procedure this summer to address his marked head turn. His Dad, Ian, has asked us to share their experiences. A few days after the operation it was time for father and son to have a chat about how things had gone. Ian continues: On the Sunday post operation I had … Continue reading Guest post – one week after Harry’s null point surgery